Hope you all had a happy Easter. We have had a very busy and quiet one as I had to get ready for a Television interview for Israel TV. It has come about because I helped a young lady when she contacted me for information of my drug thinking she would have to come to the Uk or go to USA but I gave the address of MSD in Israel.

At 35 Nika had had the same chemos as myself and was so worried. So I gave her all our Doctors that would help and all the info I could on trials in the hope she would find something.

Im thrilled to find out that the MK3475/158 that Warriors have got here started at the same time as Israel and Nika has got on it. So we chatted for the cameras just talking about our journeys but more about Keytruda and how we felt on the trials.

The main thing they want to explain and to show how critical it is to get people to get this treatment if they do not have money to pay for it even. The same problem we have with trials around the world.

A very weird experience with no reporter or interview and the difficult of different cultures and the skype kept saying not a strong signal. My computer even crashed at one point. I thought I was going to panic. then Louis kept coming and bashing me on the legs for chews the cameraman couldn’t get out of the shot it got funnier.

Anyway its a take and I await what happens next apparently not being shown in Israel until June

What a weird experience.after a terrible night where storm Katie really hit us. All night the rain was horrendous beating on the windows and the wind howled around us. I got up and the dustbin was over with the wishing well and plant pots and my poor My Pig was broken in half. I had him for my 25th wedding present from Rye.

The cover of the Air vent in the bathroom had shot off that woke Louis up and we got up wondering what was going on.

Still all in all we were lucky to the damage some people had.

Thousands of homes are without electricity because power lines have been brought down which UK Power Networks say it is working flat out to fix.

Ferry crossings from Dover are also being delayed after bosses decided to close the port until midday and engineers are working to fix storm damage at Dreamland theme park in Margate.

Numerous roads have been closed by fallen trees as the storm developed overnight following the Met Office amber warning for the county and particularly coastal areas.

Then I had a link on Twitter which I stupidly opened and it was sent to everyone. I had to delete people and change passwords as well as putting a message up not to open any links from me but a contact said it didn’t open anyway –Thank goodness and now I’m all quiet again panic over

So I will have a relaxing rest of the day I have a break now until Friday when ADAO Asbestos Conference starts.

Mesothelioma UK in their uniforms we want to see one of these in every hospital that s the dream.

On Tuesday I had to change my Drug day at the Royal Marsden to Wednesday so that Ray and I could attend the

Parliamentary Asbestos Seminar 2016

by Laurie Kazan-Allen

An extraordinary meeting of MPs and invited guests took place yesterday (March 22, 2016) in the House of Commons under the auspices of the Parliamentary Asbestos Sub-Group. The original objective of the two-hour event was to showcase the cutting edge work of UK mesothelioma researchers and call for a coordinated and long-term government strategy to find new treatments and a cure for a cancer killing thousands of people every year.

The agenda for the meeting which had been planned earlier in the year was changed this week to reflect the March 16, 2016 announcement in the Budget that the government would provide the sum of £5 million to establish a National Mesothelioma Centre of Excellence (see: final Seminar Agenda). While this news was greeted enthusiastically by patients and members of the mesothelioma research community, there were few details available about how the money would be allocated. From comments by Lord Alton, it was believed that the £5m had been earmarked for Imperial College at the suggestion of Imperial College’s Professor Sir Anthony Newman Taylor CBE. According to Lord Alton’s blog, Newman Taylor had urged the government to release LIBOR funds1 to:

“help fund a national mesothelioma research centre, which Imperial wishes to create with the National Heart and Lung Institute, the Royal Brompton Hospital, the Institute of Cancer Research and the Royal Marsden Hospital.”2

To learn more about the government’s decision, on March 21st Ian Jarrold from the British Lung Foundation (BLF) and Professor William Cookson from Imperial College were invited to address the seminar.3 While the BLF spokesman acknowledged that his organization, like the others represented in the chamber, had been left out of the loop, Professor Cookson indicated that the money would indeed be coming to Imperial. Having expressed his unfamiliarity with the people attending the seminar and the speakers making presentations, the Professor appeared bemused by questions about the validity of this money being given to Imperial without consultation with stakeholding groups such as the Parliamentary Asbestos Sub-Group, the Asbestos Victims’ Support Groups Forum, Mesothelioma UK and others. Calls for discussions with politicians, civil servants and researchers over the final location for the National Mesothelioma Centre of Excellence were unanimously supported by those in attendance.

A full report of the content of the presentations and discussions is under preparation. For now, we are uploading a series of photographs from the day.

Trevor Barlow, mesothelioma patient, who spoke about “Living with Mesothelioma.”

Mavis Nye, mesothelioma warrior. The title of her presentation was “A Patient’s Perspective on Mesothelioma Treatment.”

Graham Dring, Chair of the Asbestos Victims Support Groups’ Forum, one of the key organizers of this event.

John Flanagan, Merseyside Asbestos Victim Support Group, making an intervention from the floor.

Kate Hill, from the University of Leeds. Her presentation was entitled “Funding and Strategies for UK Mesothelioma Research: Where Now?”

So today Ray and I travelled on very busy road to the Marsden for my drug.Keytruda.

We still get there on time and booked in. My bloods taken and and extra vile was filled. This is for a special DNA test where the are looking at the make up for my DNA and to see if a target drug could be matched for future treatment.

I was told they have many mesowarriors coming for the trial that had open and is now closed as they have the full quoter. Little did I know that their first day was today,

A woman came and hugged me in tears as she told me how grateful she was I had alerted her daughter on Face Book. How amazing.

But a man sitting opposite said Your Mavis Im here because I read your blog and I applied for the Trial.

I saw the doctor who is worried about my swollen ankles but doesn’t want to give me Diuretics in case I dry my KIDNEY out but to really drink extra fluid and flush the kidneys out. Everything is good with my bloods and my kidney looks very good so I will fill a jug of water in the morning and then again in the afternoon and lets see if that does the trick and I will know how much I have drunk..

So we went down for Lunch and my new friend ate with us as we discovered about his Mesothelioma .

We sat back in the waiting room but my Drug was ready in the pharmacy so while it was collected I went to the bed

I said it wasn’t worth sitting on it, as they would have to change all the sheets so Ray and I sat on chairs. He relieved a message that another couple were looking for us. I really knew what was going on then that this was the start day for everyone.

This lovely lady came round and we hugged and she was so sweet to Ray.

My nurse said she will order a blue plaque saying Mavis slept here you so well know.

After I had my drug and I was free to go I found this lovely couple and I sat and chatted with her husband as we had already had a long chat on the phone so we did know each other. Got up to go home and a handsome young man shook my hand and said Mavis we have messaged each other and yes another of my contacts.

We are going to call it the Keytruda Club at the RM.

I have more to meet and I would hate to know they were in the other wards and I had missed them.

I wish them all my love and luck and pray the succeed on the trial. They know it isn’t for everyone and that there is always a risk but what have they got to lose.

Yesterday was a funny day. It started with a message from a Mesowarrior messaging to say she was near by so could she drop in. I had to get out of my pink dressing gown and shower and tidy up.

She came loaded down with a huge bouquet of flowers and a toy for Louis. Which he loved even if he played up and didn’t like her looking at him. He did calm down.

We had a good catch up and then she was off home.

Facebook kept me busy as so many people were so annoyed over the Budget. I dont usually do Politics in such a huge way on my wall but we were so enraged over cutting money to the most vulnerable. True disabled people. The whole mess ahs to be sorted out but Social Media has bought about a U turn and

Iain Duncan Smith quits over planned disability benefit changes.

So it has been a real political weekend

We then booked Louis into Kennels for May when I go to iMIG

I will be talking here as Prof Dean Fennel is so pleased with my results on the trial MK3475 (Keytruda) They are shocking the world and made even more amazing when Lou in Australia has announced that it has failed her.

She has written Every 3 weeks I have had an overnight infusion of Keytruda in hospital. Up until 24 Feb 2016 I have had many months of excellent quality of life.

A scan on 24 Feb 2016 showed NO FLUID, however it did show new tumours growing inside both lungs.

24 Feb to 16 March, I experienced caving in of the chest upon exertion, blurred vision and extreme dryness of face, throat and skin. I craved iced water and lime squeezed into it. Also coffee milkshakes! Swallowing a bit hard needing a drink with it. Weight loss of 5 kilos from 55 to 50 kilos.

16 March 2016 into hospital for my overnight Keytruda infusion. I had the usual blood tests prior to Keytruda – and MY BLOODS WERE EXCELLENT!

17 March 2016 Dr Zimet did his rounds at 6.15am. He said unfortunately the big growth tumour in the diaphragm is growing, and the tumours in the lungs are joining up and there is a new growth above the right lung. He wanted me to stay another night and have an MRI of the brain to see if the mesothelioma tumours are spreading to the brain (blurred vision etc). I said I didn’t want to stay another night in hospital and he smiled and said “Lou I want to work out a plan before the weekend.”

I had the 25 minute claustrophobia, head pounding MRI and waited for Dr Zimet to do his rounds the next morning.

18 March 2016 – 6.30am Dr Zimet did his patient rounds. MRI clear! Even though Keytruda has stopped shrinking my tumours, given me quality of life and it has continued to shrink the fluid, no oxygen, NO PAIN and MY BLOODS ARE EXCELLENT, he has taken me off Keytruda and has started me on a weekly course of chemotherapy (Vinorerlbine/Carboplatin) to hopefully stabilise and maybe shrink the tumours.

I had my first dose of chemo yesterday and was out of the hospital by 3.30pm headed for home!

Every day that I was in hospital Keith (my husband) was by my side. He would leave home 4.45am on the Thursday and Friday in the hope of being there when Dr Zimet did his rounds and be there with me when Dr Zimet discussed my case. Unfortunately both days Keith walked in the hospital 5 minutes later! He stayed the 3 days until well after 7pm. Thank you to my wonderful sister in law Cheryl who came into the hospital on the Thursday as us 2 escaped the hospital to a little Italian restaurant where we shared a plate of pasta! http://asbestosaustralia.blogspot.co.uk/2016/03/mesothelioma-progression-and-kick-up.html?spref=fb

She must be so devastated as we put all our hopes on Keytruda. The only thing is that by paying private she didn’t have the large dose I had on the trial. Mine was 10mg/kg.

The next trial that has just opened here is 200mg no matter what you weigh so they are still experimenting on the dose.

But there is hope that Chemo has worked better when a patient has come off Keytruda. So we pray that she has success and can survive longer.

Bernie Banton Foundation Australia have, by a strange coincidence, started a petition that is really sums up the problem in Australia.

Make it possible to fast track drugs to treat asbestos & other rare cancers onto the PBS.

Bernie Banton Foundation

Mesothelioma is a rare cancer only known to be caused by exposure to asbestos. There is currently no cure, with less than 5% of people living 5 years after being diagnosed.

Mesothelioma is a cruel disease, I know, I lived the mesothelioma journey with my late wife Julie Bastian, for 3 years, 1 month and 7 days, nursing her at home until she died in 2011.

Over 750 people in Australia were diagnosed with mesothelioma in 2014.

In Australia, one person dies every 12 hours from the effects of mesothelioma.

The first, and only drug listed on the Australian Government’s Pharmaceutical Benefits Scheme (PBS) specifically for treating mesothelioma, is a drug called Alimta (pemetrexed). Alimta’s inclusion on the PBS took 4 years from 2004 (when it was released) to 2008.

Up until recently, the release of Alimta into the market place in 2004 was the last recognised advancement in the treatment of mesothelioma.

There are now new immunotherapy drugs being developed showing much promise in the fight against mesothelioma. One such drug is already listed on the PBS for use on advanced melanoma, which means a melanoma sufferer will pay approx $38.00 per treatment, but a mesothelioma sufferer will need to pay over $5,000 every three weeks to be treated with it – this is out of the reach of the average person.

We didn’t have the option of trying to save Julie’s life by her being treated with the new immunotherapy drugs. If they had been available, I sure know we would have expected to be able access it on the PBS.

Pharmaceutical companies are not applying to have these potentially life saving drugs listed on the PBS for use in treating mesothelioma and other rare cancers, as they do not have the trial data necessary for a successful application. To obtain this data would take many years due to the high number of patients needed to be trialed.The requirements can only be met in a short time frame when there are high numbers of people being diagnosed with a particular disease – melanoma is a perfect example of this.

The body that makes the decision on whether or not a drug should be listed on the PBS, the Pharmaceutical Benefits Advisory Committee (PBAC) cannot considera drug to be listed on the PBS until the owner of the drug applies for it to be listed.

In short, if the developer of the drug does not apply for the drug to go on the PBS, then the PBAC cannot list it on the PBS.

Practical changes need to be made to the system to facilitate drug companies being able to successfully fast track applications for valid drugs to be listed on the PBS for treating rare cancers such as mesothelioma. Discussion papers have indicated this can be achieved without compromising current standards and safeguards.

The Bernie Banton Foundation is calling on the Federal Minister for Health, the Hon. Sussan Ley MP to act now to change the application process to allow fast tracking of drugs with potential for treating mesothelioma, and other rare and less common cancers, to be listed on the PBS.

To not do so, discriminates against sufferers with rare and less common cancers.

Signing this petition will give strength to the foundations advocacy efforts to persuade Minister Ley to change the status quo. The successful outcome of this petition could open up a whole new world of treatments for sufferers of mesothelioma.

Please sign and share, you could be helping save the life of current and future sufferers of rare cancers, including mesothelioma – you never know, it could be you!

Been very quiet this week as I have been feeling so rough. I came out with a cold and felt very under the weather. I wondered if my immune system was having to work over time with a virus in my body as well as the drug.I have made notes and will discuss with the doctor even if he poo hoo’s. I had no energy at all and felt so very low. But after the weekend I have perked up today and the cold has subsided.

I have had so many people getting in touch with me about Keytruda. Its the In drug now. I will have company at the Marsden as a small trial has opened and it has now opened in Australia as well so that will help out for those that are paying for the drug.

I have had a message from someone here in UK who has chased the drug privately at a cost of £24000 for 4 sessions which is being claimed on the compensation fight. That means My would have cost £246,000. But then I wouldst be going for 2 years of it as I would have stopped when I had a good result.I do appreciate the NHS I really do

The history of the NHS in England

Since its launch in 1948, the NHS has grown to become the world’s largest publicly funded health service. It is also one of the most efficient, most egalitarian and most comprehensive.

The NHS was born out of a long-held ideal that good healthcare should be available to all, regardless of wealth – a principle that remains at its core.

It is admired through out the world and it has to be kept safe. It is being threatened and we have many campaigns running at the moment as Jeremy Hunt seems to be heel bent on disbanding it and making it private.

I wish they could remove it from the political stage where it gets knocked and pulled apart with each Government that rules every 5 years. It doesn’t help that each Government changes things. Just as one path way is settled we have an election and its all change. The amount of paperwork that is produced is costly.

The early years 1948-1959

July 5 1948 – The NHS is born

When health secretary Aneurin Bevan opens Park Hospital in Manchester (image right), it is the climax of a hugely ambitious plan to bring good healthcare to all. For the first time, hospitals, doctors, nurses, pharmacists, opticians and dentists are brought together under one umbrella organisation to provide services that are free for all at the point of delivery.

The central principles are clear: the health service will be available to all and financed entirely from taxation, which means that people pay into it according to their means.

1952 – charges of one shilling are introduced for prescriptions

Prescription charges of one shilling (5p) are introduced and a flat rate of £1 for ordinary dental treatment is also brought in on June 1 1952. Prescription charges are abolished in 1965 and prescriptions remain free until June 1968, when the charges are reintroduced. Find out about today’s prescription costs.

1953 – DNA structure revealed

On April 25, James D Watson and Francis Crick, two Cambridge University scientists, describe the structure of a chemical called deoxyribonucleic acid in Nature magazine.

DNA is the material that makes up genes, which pass hereditary characteristics from parent to child. Crick and Watson begin their article:

“We wish to suggest a structure for the salt of deoxyribonucleic acid (DNA). This structure has novel features which are of considerable biological interest.”

1954 – smoking and cancer link established

In the 1940s, the British scientist Sir Richard Doll begins research into lung cancer after incidences of the disease rise alarmingly. He studies lung cancer patients in 20 London hospitals and expects to reveal that the cause was fumes from coal fires, car fumes or tarmac. His findings surprise him and he publishes a study in the British Medical Journal, co-written with Sir Austin Bradford Hill, warning that smokers are far more likely than non-smokers to die of lung cancer. Doll gives up smoking two-thirds of the way through his study and lives to be 92.

1954 – daily hospital visits for children introduced

Until now, children in hospitals are often allowed to see their parents for an hour on Saturdays and Sundays only and are frequently placed in adult wards, with little attempt to explain to them why they are there or what is going to happen.

Paediatricians Sir James Spence in Newcastle and Alan Moncriff at Great Ormond Street are making considerable steps to change this, demonstrating that such separation is traumatic for children. As a result, daily visiting is introduced gradually. Learn about children in hospitals today.

1958 – polio and diphtheria vaccinations programme launched

One of the primary aims of the NHS is to promote good health, not simply to treat illness. The introduction of the polio and diphtheria vaccine is a key part of NHS plans. Before this programme, cases of polio could climb as high as 8,000 in epidemic years, with cases of diphtheria as high as 70,000, leading to 5,000 deaths.

This programme ensures everyone under the age of 15 is vaccinated and will lead to an immediate and dramatic reduction in cases of both diseases.

The NHS in the 2010s

The NHS is undergoing major changes in its core structure, including who makes decisions about NHS services, service commissioning, and the way money is spent. Find out more inthe NHS in 2013 section, below.

So far, the 2010s have seen great medical breakthroughs and health innovations, the NHS was celebrated at the London 2012 Olympic Games, and marked its 65th anniversary on July 5 2013.

So much has been accomplished and now we have Innovation almost through.

Lord Saatchi has written a wonderful piece in the Daily Mail —

At 10am that morning, a Private Member’s Bill I introduced passed the Committee stage in the House of Lords. It now seems set to receive Royal Assent and will become law. Its ultimate aim is to cure cancer, the disease which killed Josephine.

I spoke for just 30 seconds, the culmination of four years of Parliamentary work. It has been a long and arduous process. Testing. But that is as it should be. Democracy, like science, requires safeguards. Practicality must trump emotion when you wish to change the statute.

I cant thank him enough for standing out and standing up for his belief that he is right.

It was a proud day I sat next to him as he introduced his Bill

Im in the House Of Commons Next Week to speak at a Asbestos Seminar about how I had to struggle to find treatment and postcode lotteries. I look forward to that as I keep digging away at the subject and pleading for better Trials and more reserach. Gradually we are being listened to. Asbestos and Mesothelioma cant be swept under the carpet it has to be seriously dealt with. PLEASE !!!

Message from Asbestos Voice ——-asbestos operatives need proper health monitoring the old ways do not cut it anymore ‪#‎personal‬ monitoring ‪#‎exposure‬ recording we have huge problems in asbestos removal and it is being ignored and the agencies do not seem to have a clue what to do about the new changes in April and it is all being ignored and it will not go away away you guys need to keep posting in all the groups cowboy firms & cowboy agencies are killing our industry

Please lets all work together to make our world safe and free from Asbestos

We set off to my Sons and DIL and had a great journey to Luton in the Motorhome.

They came home from work and we had a great evening meal together.

We got up early Saturday and travelled to the Station where we caught the train to Leicester after watching the Bendy – bus coming in from the Airport.

Our ticket didn’t work in the ticket machine so that was a great start.

We got to Leicester and then on the next train was a cross country on a Virgin train which was absolutely packed with people going to Birmingham to shop etc.

Every carriage was full and people were standing all the way through every carriage. A lady sat on our table ekkk!!

When we pulled into Birmingham I was so pleased to get into the fresh air even if it was cold and snowing just a little.

We asked for a train to Snow hill and was told there wasn’t one that we had to walk. So we got a taxi. It just went round the ring road past the Bull Ring and came to Snow Hill Station. Whoops silly !!

Our friend picked us up in her car and we arrived for the Hazmat directors Meeting.

We thrashed a lot of things out and had a good meeting so we are ready for the Launch on the 31st march. Hazmat Professionals and Foundation are now all set up It has taken a while but we are there now.

Ray presented the painting he had done for Steph as a surprise

She will hang it in her office

She wrote on facebook —I had an incredibly talented artist paint me a beautiful piece of art. The most beautiful gift ever. Thank you Ray…it’s equisite. Xxx

Makes ray so proud when someone enjoys his paintings

We went to our room and had a rest as we went out for a really great curry Saturday Evening.

Sunday we had a breakfast in Toby’s, all you can eat, that was to much for me but some people can really load their plates up.

Then it was time to get to the station and the journey home was longer and colder by the time we got back to Luton we were getting tired but bless I had Mother’s day presents waiting to cheer me up.A lovely Dragon Fly Necklace.

A roast dinner and I was so tired but we had a great conversation and then bedtime.

Next day they went to work and we drove home in the Motorhome and the journey was great.

Then this morning up early again and off to the Marsden. We arrived and got called in early saw the Doctor and she was very pleased with me. My bloods were good.

Our friends that sit in Reception to the Rehabilitation Ward made us laugh. We have known them for 2 years now so we have really become friends and Nicky had made us Scotch eggs and bread and butter pudding and made a cup of tea. The other patients must wonder why but Ray has painted them paintings and he is always chatting to them.Nicky id leaving soon so its the last time we will see her although she said she has a drive big enough for the Motorhome if ever I’m in the hospital and Ray can stay with Louis. We have met so many wonderful people.

So we cant believe I had the drug at 1.55 –the earliest we have ever had it.

My lovely nurse is pregnant with a baby girl its been exciting to have seen her get married and then tells us when she was pregnant. I hope I get a chance to meet the baby but I might have to make do with photos.

Another nurse who is had come back from Australia surprised me she stands there and just rubs my arm and then says I so admire you. Its a crazy world Im in. So mush love for me –really weird.

We came away and a good journey home and another 2 weeks ahead of me. I wish it would warm up so we could go out to the see the sea each day.

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Disclaimer
This all comments on this blog are of my own opinion Im not responsible as an “expert” and for what people do with my advice and wisdom. Anyone reading my blog will not hold you libel for what you say or display.The content on the blog is the opinion

DISCLAIMER

All comments on this blog are of my own opinion Im not responsible as an “expert” and for what people do with my advice and wisdom. Anyone reading my blog will not hold you libel for what you say or display.The content on the blog is the opinion of the blogger, not intended to “malign any religion, ethnic group, club, organization, company, or individual,